I am very sorry to have to share the news that our dear comrade Roland Doucet, Rollie, or "nomansland," passed away on May 5th. We had been in occasional off-site conversation, and suddenly he ceased to reply. I don't know any more, except I finally this morning searched for and sadly found his obituary. Rollie cared for his wife devotedly for the 12 years she suffered with PSP. He was grief-stricken when she died last year, and all he wanted was to be with his beloved Madeleine again. Theirs was an inspirational love, and I hope with all my heart they are in some way together now.
Love and Peace to you all. Easterncedar
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Oh that's terrible. I had many a conversation with Rollie, being across the pond, we quite often had a "chat" at silly o'clock in the morning, when one of us couldn't sleep.
Perhaps you can die of a broke heart, he certainly loved his Madeline.
How I hate this disease, it never stops taking. In this case poor old Rollie, who cared so well for his wife, during her battle with PSP. Somethings in life just aren't fair. This is definitely one of them!
Going through the six month hell. Up one minute, down the next. Have just booked a holiday, going away on my own, with a specialised solo holiday company. Cruising around the vineyards of Bordeaux in France. Frightened silly!!!
Hi Heady, well done you, booking a holiday. I can understand your fear. I'm going to Vancouver Island on my own to visit a great aunt and am sure I will get lost. I managed to get myself to Nuneaton last week, 3 trains and I haven't been on a train on my own for years. Twice I must have looked lost as total strangers asked me if I was OK. I made it with their help and found my way back a week later. I've thought of booking a holiday like yours but have run out of time this year now....too many other things booked.
It will be so good for you to meet a lot of new folk and I expect some others would be in a similar situation to you. I hope you have a great time.
NannaB the plane takes you there? 😊. Is it the driving bit that worries you? I don't drive so would be like Paddington but in this case at the airport! I am told Vancouver is lovely. How nice to see your Great-aunt too? Bet she is so excited?
She certainly is. Her husband died 2 months before C and she has no family near to her. I'm getting a taxi to the airport so that's no problem but whenever I have flown there has been a problem. In November, when I went to Budapest with 5 friends, the others all went through to the plane and I was stopped. There was something wrong with my online ticket so my seat had been given to someone else. I only got on because a young chap had a panic attack and ran off the plane. The hold doors had already been closed. In Vancouver I've also got to catch another flight to the island, getting a bus to the other plane. I know I'll get there OK. I'll be driving a station wagon when I get there, owned by Jean who doesn't drive any more, so that is concerning me a bit, driving on the right.
I've decided to think of it all as an adventure. My boys all travelled in their teens and they survived and had a great time so I am going to try to relax and enjoy my gap year.
NannaB what is the worst that can happen? Another person having a panic attack? 😀 You will be directed to the 2nd plane? You are a strong confident woman! I love the idea of you having a gap year!
Your aunt will be so delighted to see you especially as she has been widowed too. I am sure once you get onto the island it will be great. We will have to have a report from you!
Not driving is so isolating. Wish I had learnt to drive many moons ago. I thought with the good transport we had and Garry driving I didn't need to. I am really finding it hard now as people don't want to know if you can't get from a to b! Everyone expects people to drive and sadly some of us don't.
I bet you will pick up driving on the wrong side without too much bother. At least you can go on a little drive with your aunt? She can maybe take you on a quiet road until you feel confident? That shouldn't be long given all you have done so far?
Marie, have you ever thought of taking it up, you know learning to drive. Like you said to Jean, go out on quiet roads and have a go at it! It's Somethng to do!
Andrea it's not that simple! When you have passed the theory test then you have to pay for lessons. Depending on how many you need it can be very expensive. Eventually you get to take your test and now they have added another bit. You have to do your test with one of the stupid machines which tell you where way to go!! I really can't believe that but it's true! They always send you the wrong way in my experience. I have even been in an Ambulance and had to tell the driver he was going the wrong way!
Plus we don't have the open roads that you have in the US. Here there is traffic everywhere, scary really!
a theory test eh? haven't they proven the theory that driving gets you there? just joking.... Well I can drive but gots no where to go and no money to get there haha... well nothing is easy. Of late, sleeping seems to be very difficult for me. Its almost 5 am and I have slept an hour or two. And thats under the care of a sleeping pill. Hope you have a good wkd!
oH THE "joy" of being lost! I was in Arizona last week, taking care of my in laws. They live in a retirement city which is built around neighborhood golf courses. The golf course is in the middle of the neighborhood which means that the roads stop at one side of the course and begin again on the other side! I was like a rat in a cage! My GPS told me to "go that way" and by golly theres the road, why isn't this the house! I was stuck on the other side of the golf course...I had to call my brother in law who was in California to guide me out of this labyrinth! Over an our past before I got back home! Did not go anywhere again......
I'm happily back home....where I have some sort of nocturnal bird assuring me that the sleeping pill I just took will not work!
I was once told by an educational psychologist that I am directionally dyslexic. That was after I missed an appointment with her in her office I had visited many times, in a town I moved to when I was 9 and lived for many years, three miles from where I lived now, but I got lost. She asked me if I could possibly find the medical room in the school I worked in if she came to me in stead of me to her. Thank God for Sat Navs......when the road they tell you to go down actually exists.
So pleased you got back safely and I hope you do have a restful sleep tonight.
Thanks, what makes it worse is that it was between noon and three....I couldn't tell which direction the sun was going to tell which direction I was going ...hahah
And about good sleep? that will depend on the whipoorwhill
I do hope you have fun in Vancouver....wow thats way out west in that other big ocean!
If you don't mind me asking, how is it she is your great aunt......?
I never knew my great aunts which would be my grandmother's sisters...right? My aunts I knew but most have passed on.....You got some string genes chick!
this is the first time I'm writing anything on here but been following the posts for a few weeks as my hubby has PSP.
I read some of Rollies posts and am sad that he has now gone, and also that you lost your husband too.
I live in France not far from Bordeaux and can tell you that it is a lovely place, there are lots of really nice people so don't be afraid just enjoy yourself !
I am sad to hear that your husband has PSP. But so happy that you have found this site. It really is a life saver, well it was for me. All my knowledge of this evil disease, came from the good folk on the site. Medical profession know nothing. Certainly have no idea, what we all go through on a daily basis.
We have all used this site to rant and rave, kick and scream about this illness and what it is doing to our loved ones and to us, the Carer. Ask any question, no matter how silly it might seem, if it's worrying you, then it needs sorting. Someone, will be able to help you, or point you in the right direction. Nothing you write will shock anyone, no one will judge, all too busy feeling exactly the same. Of course, a lot on here will frighten you at first, but slowly as you get use to PSP being in your life, you will find the advice enormously helpful and be aware and to some extent, prepared for the next crisis.
You haven't said what stage your husband is at. All I can advice you now is, concentrate on what your husband can do, not be tied up with what he can't. Live each day to the full, don't think about tomorrow's problems, today will have enough challanges. The most important thing is, don't be shy to ask for help. You are the most important person in your husbands care. You have to be 100% fit and well, to do this. Doing too much and getting overtired, is the quickest way for that to all fall apart. You are first and foremost, his wife, never forget that, anyone can do the physical caring, but only you can hold him and tell him you love him.
You have just joined a huge loving family, we have your back. You are not alone in this struggle anymore.
I think hubby is in his 3rd year , the first thing we noticed just over 2 years ago was when he tried to get into the van he just couldn't lift his legs and it would last several minutes Then he had a few falls so we saw the GP who sent him to see a neurologist last year. He then spent a week in hospital last June where they tried him on dopamine which helped a bit at first but not very long. After that in november we spent a day being questioned and they tested his eyes and reflexes in a neurological unit in Bordeaux and that was where they first mentioned PSP but weren't really sure.
I then did as much research as I could on internet and when we saw the neurologist again in January was pretty sure it is PSP which he confirmed.
This afternoon we have a medical bed arriving as after reading posts on here I decided not to wait until my back couldn't take it any more as he needs help getting up. He can still manage on his own but it takes him a very long time and uses up what energy he has. Maybe with the bars and being able to sit him up as it's an electric one that will take some of the hard work out of it ! (sorry if this sounds muddled, I'm more used to speaking french after 31 years over here!) I just want him to be as comfortable as possible !
Tomorrow we will do our saturday market, I sell english books ! I have to do the driving now and set everything up but will carry on as long as possible as we get to see lots of people and speak in English !
This site has already helped me by just being here and frightened me too but it is good and at the same time sad to know there are others out there who are going through the same thing.
You will have a good time I am sure! Burgundy is lovely. Apart from the attraction of the vino do you get to visit anywhere else?
I have been invited to France but there are so many going I just can't face it! If it was the person who had invited me originally and her husband that would have been alright but now there are too many going that I would have to make conversation with. So have said no this time. She actually lives in the US and has asked me to go there too!! Don't fancy such a long flight alone. It's really hard being alone isn't it?
Have to find a little holiday first I think. Maybe in this country or Scotland? Can't see me being brave enough to go anywhere alone if I am honest!
Like you I am up and down all the time. Wonder does this last forever or is it a phase? Anyone know?
Bordeaux is lovely too! 😀. Just realised I said Burgundy before...but it is nice there too! You could do the vineyards everywhere, if you like it this time? 😁. Bordeaux is where I was invited to too! Wouldn't have known you if I had seen you though!
Wishing you a wonderful time, Anne. It will feel strange, on your own, but you will enjoy the sun on your face, the views, the wine... And if you ever make it as far as New Jersey, you are always welcome xo
Hi Anne. Well done for booking the cruise. A friend who lost her husband a couple of years ago has now taken to cruising like a duck to water. She enjoys it so much that she has booked her 2nd world cruise with a friend she met on her first. The cruise organisers make a special effort with people travelling alone. Again, well done. I know you will have a wonderful time.
EC that is sad news. I don't think I knew him. I only came onto the site in October so perhaps he wasn't posting then? He must have been so very sad. It is a huge thing to try to get through? I am struggling at times. All the so called friends vanish and you are left alone.
Glad you are still working as that takes up some time and keeps your mind occupied?
EC sadly we all say those things and then life gets in the way? One of the things I am struggling with is this awful feeling of being so lonely all the time. I am sure it is not good for anyone. That's why you are lucky to have work still. I just want to go out for a coffee or lunch but people are always busy! I think they imagine I will cry all over them but I just want to feel normal and laugh sometimes.
Well Marie, I will go out with you....I to am having feelings of, as the doc says, being stalled......Unlike NannaB I do not have the monetary but may even the guts to do more that I'm doing. I feel this fear and sometimes like I';m coming our of my skin...a most uncomfortable and I am sure psychological manifestation of grief.....I am reading a book by Max Lucado a Christian author. he suggest to those whose life is hard to impossible the reasons as to why its hard and that they will get through it. I fell asleep to the book around 8 am, didin't get out of bed till about 10 and am ready again for sleep at 7 ! Maybe I will beat the squaking midight birds!
who would have thunk I just need to release ....and have that faith I so believe in....
A shame you don't live near me. We could have tea in a different place everyday! Someone told me to just talk to people if I go for a coffee. Have tried that and people look at you very oddly. They smile and politely answer but it is obvious they don't want to get talking. Probably think I am mad? Maybe I am? I do wonder at times.
We are having a heatwave here. You would probably laugh as it would be nothing to you. I can't cope with the heat here though. It's very oppressive. I have a thumping headache so need more tablets to get rid of it. I have 2 cousins in California and don't know how they cope with the heat!
I've been invited to Connecticut by a really nice lady who I have been online friends with for years but we have never met. Her winters sound amazing!! Now should I go and get snowed in? 😁. I was born in Ireland where there are seldom extremes of weather. It is usually the same where I live actually but we are having one of those times when lots of English people are delighted and I wonder what is the matter with me! Today it was about 30c but so oppressive. Going to be high 20's tomorrow. Tuesday it will be mid 20's. More to my liking!
You will have to tell me about that book you are reading. I have so many which I never managed to read and can't seem to now! Maybe I will follow your example and read them after all.
You sound like you are having some odd experiences. Haven't had anything like that but I do want to sleep a lot.
Hey Marie, 20c sounds very doable; and really, for me anyway, 30c not so bad if humidity is low... It was in the high 90s...34c(?) in Arizona but no humidity so it was quite comfy in the shade....I usually kick the AC on at about about 26....if I'm not "drinkin" the air that is!
I believe now all that I was feeling last week from the heart to the "out of skin" experiences was brought on my the sickening worry of my parents in law in AZ; a panic attack, if you will. They are healthy and thier son who lives with them is doing the best he can albeit not the best it can be.....I,m sure others could have said the same for my care for B, so I shouldn't be so hypercritical....The book I'm reading, is "You'll Get through This" . He takes the reader on a journey through Josephs life . from when he was the loved son of his father, thrown in the pit and left for dead by his jealous brothers and the subsequent powerful relationship with the powers of Egypt and his ever focus on the love of God and his people.....even his brothers who tried to kill him!
Even though a teacher , I don't much care for the "sport " of reading. I am rather slow and habituated to falling asleep when I read books.....which is exactly why I started reading this one. And I do fall asleep to it but it makes for a lovely sleep. And I have fixed my bird noises that also kept me from sleep; I had replaced windows that my poor husband either broke or I did trying to get them open. In replacing them, I had failed to put the storm window back on, After I did that...I could no longer hear the night squawkers....don't get me wrong, I love birds in nature, just not from 1 am til sunrise....when the other birds wake up!
Connecticut in the winter sounds wonderful for a week or two...just enough to experience the beauty .Before global warming, this part of Arkansas got some lovely winters snow that would last a week and go... and left the schools closed at even the threat of that kind of storm! I used to live in Northern Nevada in the Sierra mts.....It started snowing in November and didn't stop til March.....Missing a day of school meant the storm just dumped 6 ft (2m) hahhaha! Great skiing though!
Well I hope you get to the US... we'll all meet in Connecticut and have a cup! But in the meantime , I hope you get to one of those books waiting for you!
I'm very up and down at the moment, some days better than others but still having huge waves of grief, I'm sure you'll know what I mean.
You're very brave going away, I do hope you enjoy it! Please let me know what it was like and I may pluck up courage to do it myself although it wouldn't be a cruise, I'm terrified of the sea!
I've been out with Shirley today (nanonthenet) and we've had a lovely time, although it's very early days for us both. We've decided we are going to Sorrento for a holiday next year, not sure I'm strong enough to do it this year!
Lovely to hear from you Anne, I hope you're coping well,
When I was a young girl, Tex, a neighbor and good friend of my aunt and uncle's died almost a year to the date of his wife's passing. Ever since then, I started noticing that men often died about a year after their first love. Wives seemed to take the passing of their love a little bit better or at least survived a little longer......This has nothing to do with my condolences to you, your friend and family but just yet another observation....
12 years....That's a long time freakin time.....I got nothin on the Rollin.....a mere 4+ years of hell.
Well Ec, peace and love back at ya....I am sorry about your friend....2017 not crackin up to be so great , eh?
Hello Andrea, this is what a good funeral wake should be, meeting old friends, you haven't spoken to for a while. All we all need to do now is raise a glass to Rollie, may he rest in peace, hopefully with Madeline beside him.
Anne good in you for booking a holiday, I am sure you will have a good time, been thinking about you all, it has been very quiet on here. Pat sending you a big hug Yvonne xxx.
Anne I hate this bloody illness, he is coughing so much, he said he was fed up did not want to live, feeling so sad for him, it is not a life living with PSP, forever chocking must be horrible, he is not good xxxxx
The choking is ongoing and like George, Charles feels the same way. Each day an episode zaps his strength. Alas, but we are treasuring the days we have now.
Baby food, etc. and no liquids. He has passed the stage. Can not take in any liquid at all even with thickener.
Hi EAsternceader. I'm sorry to hear about Rollie's passing. We kept in touch for a while, but I have not heard from him for some months. His devotion to his wife was an inspiration to me. He was one of the contributors here who kept me going when the going was tough. Thank you for letting us know. Love Maddy x
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Farewell to my amazing husband
did anyone have other symptoms prior to psp
Just having a word with myself
